Communications systems and their models: Massachusetts parent compliance with recommended specialty care after positive cystic fibrosis newborn screening result
Department of Pediatrics; New England Newborn Screening Program
Aftercare; *Communication; *Cystic Fibrosis; Decision Making; Genetic Counseling; Health Knowledge, Attitudes, Practice; Humans; Infant, Newborn; Massachusetts; Models, Organizational; Models, Psychological; Neonatal Screening; Parental Consent; Parents; *Patient Acceptance of Health Care; Program Evaluation; Retrospective Studies; Time Factors
Allergy and Immunology | Pediatrics | Respiratory Tract Diseases
OBJECTIVE: To evaluate compliance with recommendations for sweat testing/specialty evaluation and genetic counseling after a positive cystic fibrosis newborn screening (CF NBS) result.
STUDY DESIGN: All infants with positive CF NBS results require a diagnostic sweat test at a CF center. Results that were "screen positive and diagnosis negative" prompted family genetic counseling. Parent compliance with follow-up protocol recommendations was retrospectively analyzed relative to the communications model in place at a particular CF Center.
RESULTS: At each of the 5 MA CF centers, 95% of the CF NBS-positive infants completed recommended sweat testing. In contrast, there was wide disparity in compliance (32%-90%) with completion of genetic counseling between CF centers.
CONCLUSION: CF centers that escorted parents through the 2 recommended follow-up steps in 1 day had higher compliance with the second step (genetic counseling) than centers that required a return visit for genetic counseling.
DOI of Published Version
J Pediatr. 2005 Sep;147(3 Suppl):S98-100. Link to article on publisher's site
The Journal of pediatrics
Comeau, Anne Marie; Parad, Richard B.; Gerstle, Robert; O'Sullivan, Brian P.; Dorkin, Henry L.; Dovey, Mark; Haver, Kenan; Martin, Thomas; and Eaton, Roger B., "Communications systems and their models: Massachusetts parent compliance with recommended specialty care after positive cystic fibrosis newborn screening result" (2005). Pulmonary and Allergy. 10.